My friend is upset. Please help. - Lung Conditions C...

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My friend is upset. Please help.

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10 years ago•16 Replies

Hi everyone,

My friend is upset as he has just had a call from his oxygen nurse who wants to put him on an oxygen concentrator. The reason for this is because she says he has been ringing his oxygen supplier too many times. He's rung them more times this month because he's had problems with his portable liquid oxygen flask.

He's upset because he thinks he will now only have a concentrator connected to the mains so won't be able to go out of the house. At the moment he is on 3L/P/M for pottering about and turns it up to 5/L/P/M when he's on his treadmill. He has Idiopathic pulmonary fibrosis and is on the transplant list.

He goes to pulmonary rehab, Reiki Healing and likes to walk to keep his fitness levels up which he's been asked to do by his transplant team. Now he thinks he won't be able to do any of this.

Is there anyone with IPF or COPD who has a concentrator in the house but also has portable liquid oxygen to get out and about? My friend has really gone down in the dumps and I don't know what to say to buck him up a bit. He's seeing the nurse tomorrow and I'm hoping he can maybe have both a concentrator and portable oxygen so he can still get out and about.

Lesley

16 Replies

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RibvanRey10 years ago

Never heard of ambulant oxygen being taken away when a home concentrator is provided.

stone-UK10 years ago

You should be able to recieve both,

There is a portable concentrater that will do 5lpm.

Do not be put of.

What is his requirements just walking?

10 years ago

Hi, no problem, I have a concentrator, 3 large backup cylinders, 4 small ambulatory cylinders & a portable concentrator. All supplied on prescription. Tell him to just ask.

Mike.

10 years ago

I have everything...ambulant oxygen, an Eclipse machine to use in the car, and a concentrator...I doubt they'll take anything away from him.

Puffthemagicdragon10 years ago

I have a mains concentrator, a large backup cylinder in case of power cuts, 4 small cylinders ( ZA ) and 3 larger cylinders ( CD ). I don't really need a portable concentrator as I'm only on a low flow.

Mandy651310 years ago

He should have been put on concentrator from the start .....it will be easier for him and he will get portable oxygen too which his nurse should have told him

imelda1610 years ago

I have IPF and have recently been on a consentrator but up to January was managing quite well with ambulatory 02 all of last year I could do so much more so I can still have the same 02 for out and about . Now I need over night 02 and whatever I need for on the move which has declined a lot it is up to me. So workout your needs and explain it to the oxygen nurse. Could be a decline in the IPF it has a way of changing your routine which is why you get down in the dumps. I know just how your friend feels all you can do is be there for support and understanding. Good luck.

Toci10 years ago

Everyone I know who uses a home concentrator also has ambulatory cylinders or a portable concentrator for getting out and about. Your friend should speak to his nurse who can order whatever he needs.

Kathygwanny10 years ago

I use an oxygen concentrator but mine has what they call the Home Fill system.

There is an extra part on the machine to enable me to fill small bottles with O2 to take out with me. One holds enough to last two hours, the other seven hours.

They have a case which has a handle and a shoulder strap. I'd be lost without them.

Hope this helps.

Kathy

PollyP10 years ago

Sounds as if your friend has loads of good advice and support from folks on here who know 150% than me about oxygen, so I wish him good luck and hope he can get his O2 issues sorted out....

feline10 years ago

This is really informative as last Wed my husband who is on palliative end of life care had his annual oxy assessment. He is on liquid oxy and also has a mains concentrator. They want him to have bi weekly instead of weekly deliveries of liquid oxy, and use his mains one more often as the liquid oxy, quote is 'too expensive', unquote. He gets his delivery on Mondays and because we have bank holiday coming up wont get next one til Tuesday. Oh, the mental anguish we are both going through because he is trying to eak it out is beyond words! He is prescribed his oxy by QA in Portsmouth but has been under the consultants at The Royal Surrey. I am so angry about it all, he has been on it for 2 years, he knows when he needs it and is feeling like he has been taken out of his comfort zone at the moment. I have written a strong letter and am waiting the outcome . I would be sooo happy if Dolby Visitol rang and asked him today if he needed another delivery Friday, I don't think it will happen though. Fuming.

rainbows-end• in reply tofeline10 years ago

I do so hope you got sorted out with an extra drop off. We we told that there was no delivery on Mon and I would have to wait until Tues. My daughter left Air Liquide in no doubt that we would ring for an emergency drop on Mon or I would use my back up cylinder. There was also the poss that she would be phoning the ambulance service. She is a Staff Nurse on A and E and they are aware of this Today I got enough cylinders to last until Wed, It can be done just needs people who care but the relief on my part was unbelievable.

rainbows-end• in reply torainbows-end10 years ago

Just re read that The people who care refers to the one or two we were lucky enough to get at Air Liquide

2malinka10 years ago

That doesn't sound right. I am on 1/2 litre min 15 hours daily and my prescription also includes 3 canisters a week, if need be. I usually keep one in the car.

Take care

Malinka

2malinka10 years ago

Sorry, forgot to mention that I have a concentrator .VisionAire 3.

Malinka

10 years ago

Thank you to everyone who has posted. I told my friend what you all said and it did cheer him up. I think he got hold of the wrong end of the stick when the oxy nurse rang. He saw her yesterday and it turns out that he can keep his portable liquid oxygen and is getting two concentrators as well. I think it's one for upstairs and one for downstairs but I'm not sure. Anyway it's getting delivered tomorrow.

I think part of the reason he got upset/grumpy was because being prescribed a concentrator means his condition has got a bit worse and the other part was the fact that he keeps having problems with the liquid oxygen. The lever on the portable flask always seems to jam. I just hope he gets a call soon and can have a successful transplant. We just have to keep our fingers crossed for a good outcome. Anyway I'm his main carer so I will try to keep him positive and keep his spirits up. I'm sure he'll bounce back, he usually does. Thanks again everyone.